Jackson was discharged on Saturday afternoon! We are home and adjusting to our new normal, which includes familiarizing ourselves with Jackson’s new medical equipment, establishing a routine and figuring out what to do with the coronavirus.

As you can see from the video below Jackson could not be happier to be home.

We came home with a lot more gear than we arrived with, namely a feeding pump and bipap machine. One of the biggest issues with having a medically complex child is organization and storage. However, with the help of my handyman dad, we were able to arrange most of the new equipment on Sunday. My dad added extra shelving on the wall and fastened the IV pole to the back of Jackson’s bed frame.

We are also working out a new routine. In addition to new medical equipment, Jackson was prescribed additional medications. He now takes meds and supplements fives times a day and he eats continuously for 16 hours per day, which means the feeding pump and feeding bag go everywhere he goes most of the time. The routine gets easier everyday as Josh and I figure out who is going to do what and how to most efficiently get it all accomplished.

Finally, we have to cope with the coronavirus, which I can’t even believe is a thing and gets more depressing everyday. We are trying our best to self-quarantine. Josh and I are now working from home. We are trying to order anything we need online and I have been instructed to only order essentials so that we can keep the deliveries to a minimum. If we go out, we come home and go straight to the basement to change clothes and wash our hands. The worst part is that my mom and I mutually determined today that she cannot see us until all of this craziness passes as she works in an adult hospital as a respiratory therapist and, as such, has the most possible exposure to the coronavirus and we need to keep Jackson healthy.

I cannot thank all of you enough for your support and prayers over the past two months. All of the kind words and gestures really helped us get through this ordeal. I hope that we can all get through this next chapter and life can go back to normal soon.